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Thursday, 15 August 2013

Welsh plans to introduce a system of presumed consent for organ donation are both unnecessary and unethical

I was recently interviewed by Emily Graves of
Crossrhythms Radio about Welsh plans to introduce a system of presumed consent
for organ donation. The following is an extract from the interview. The full
transcript is available on line.

Emily: Please could you start by outlining what the
previous law was and the changes that have now been made in Wales?

Dr
Peter Saunders: The current law throughout the whole of the United Kingdom is
what we call an opt-in system. If you carry an organ donor card, or if, after
your death, your relatives are happy to give permission for your organs to be
taken, then that can take place and organs from one person can help up to nine
people through transplants. That's the current system: opt-in. What Wales has
voted in, is an
opt-out system, which means that it would be assumed that you would be an
organ donor unless you specifically asked not to be beforehand. It relies on
people to take the step to say no, otherwise the organs will be taken and the
family can be overruled on that whole process.

Emily: Do you know why this law was looked at in
Wales?

Dr
Peter Saunders: It's all aimed at increasing the number of organ donors that
there are because there are thousands of people on the waiting lists throughout
the UK, who want organs. They are always asking questions of how the need can
be better met and this was an attempt to improve that. The law doesn't come
into force until 2015 so there's some time now to put regulations together
under which it will operate.

Emily: Does the bill therefore presume that
children's organs will be donated the same as adults?

Dr
Peter Saunders: No, it applies only to adults, so you've got to be 18 or over
in order to have organs taken under this bill.

Emily: At the Christian Medical Fellowship what is
your viewpoint on organ donation?

Dr
Peter Saunders: We think in general terms that organ donation is a very good
thing and that people should be encouraged to sign up as organ donors, because
a transplant of an organ can be absolutely life-changing for a person and as
I've said one person can help donate organs to nine different people because of
the whole variety of tissues that can be used in organ transplant. I think it's
in line with making sacrifices and loving others; it resonates very much with
Christian values. But we feel that organ donation should be very much a
voluntary thing in the form of a gift and that organs should be given and not
taken and not presumed to be available and that the rights and interests of
family should really be paramount at the time, because almost every situation
where organs are taken it's a case of sudden death, often in an accident and
often of a young person. The family are going through incredible psychological
and spiritual trauma at the time and the thing needs to be very, very
delicately handled. We're not in favour of this kind of hard opt-out system
that's been proposed in Wales.

Emily: How is this bill significant for Wales?

Dr
Peter Saunders: It makes Wales the first country in the UK to do it. There are
some countries abroad that have this system already and that's important
because other parts of the UK will be looking at how it works in Wales and asking
the question about whether they should be implementing it themselves. In terms
of numbers, the advocates say it will give about 15 more donors a year; given
that the average is that one person could supply up to nine organs, the average
is about three, so we're looking at about 45 people being helped, they argue.
But there's a lot of controversy about whether it will actually increase the
numbers or whether it would be counterproductive.

Emily: So it will be a little bit of trial and
error as they go along?

Dr Peter Saunders: Yes. We don't think there's any real
evidence that it works to increase the number of organs available and because
of these ethical concerns we have about it we don't feel we should be going
down this route. There are some countries, they claim, where it has helped to,
or has been associated with, an increase. But there have been other countries -
Chile is one example - where they introduced presumed consent and the number of
donations actually went down. We think there are better ways of doing it and
back in 2008 the organ donation task force that looks at these issues made a
number of recommendations throughout the UK, which didn't include presumed
consent at all, but which have led to a huge increase in organ donation. Since
2008 we've had a 50%
increase in organ donations throughout the UK through other means and in
Scotland and Northern Ireland figures were 74% and 82%
respectively.

The main thing that seems to make a difference is the
appointment and training of specialist nurses who can spend time with the
bereaved family, really sensitively explore the thing, talk them through all
the steps involved, make sure that there's no element of coercion and that it
really is a voluntary choice. Then also what's really important is to feed back
news about the people who've been able to be helped because that can really
help a family to be able to cope with a death. We think the whole thing should
be done relationally in the context of discussion and that it shouldn't be a
decision made behind closed doors where the family can be overruled. The family
has to be very much at the centre of things. If we put them in a situation
where they feel they've lost control and that their loved one's been raided for
organs before they've had a chance to think through it, it could really damage
and undermine trust, so we think relationship, donation and gift have to be
right at the heart of this and these are strong Christian principles.

Emily: Why is trust so important in this?

Dr Peter Saunders: If people feel that there is an
undermining of trust: that decisions are being made by powerful people into
which they have no input whatsoever and that they're on a kind of conveyor belt
where they haven't had a chance to be able to think through things, it can
undermine trust and that leads to fear and anxiety. It can lead to bad
consequences for the family because of that and also, more widely, distrust so
people hearing about it will perhaps opt out of organ transplant when they
might have been quite happy to opt in if it had been better handled in the
past. I want to underline again the fact that organ donation virtually always
takes place in the context of sudden death when people are hugely traumatised
and that's why it needs to be so carefully handled.

Emily: Wales is the first country in the UK to go ahead
and do this. Do you think that it encourages England and Scotland to watch what
happens and bring a similar bill in England and Scotland?

Dr Peter Saunders: There are consultations that are either
underway or about to be underway in other places. Just recently Scotland has
said that they want to see how the thing works in Wales first before they
embark upon it, so that would mean a few more years, but there is pressure
being put on by groups like the British Medical Association who are very keen
about this new approach. As I've said we take a very different view from them,
so yes there are anxieties that this might be the thin edge of the wedge; that
Wales is a soft way in and that it might be a ploy to get the other parts of
the United Kingdom to agree to it without properly thinking through the issues.
It will no doubt influence the situation elsewhere and of course if it doesn't
work in terms of providing more organs then the other parts of the United Kingdom
will be more resolute in wanting to go in the opposite direction.

The CMF submission on the
Welsh Organ Transplant Bill can be viewed here.

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Kiwi, Christian and Medical

This blog deals mainly with matters at the interface of Christianity and Medicine. But I do also diverge into other subjects - especially New Zealand, rugby, economics, developing world, politics and topics of general Christian and/or medical interest. The opinions expressed here are mine and may not necessarily reflect the views of my employer or anyone else associated with me.

About Me

I am CEO of Christian Medical Fellowship, a UK-based organisation with 4,500 UK doctors and 1,000 medical students as members. The opinions expressed here however are mine, and may not necessarily reflect the views of CMF or anyone else associated with me.